Regulating HIV transmission

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Source: Beyond Blame Forum: Challenging HIV Criminalisation (July 2014)

Last weekend I flew up to Brisbane for the ‘Risky Business’ forum on HIV criminalisation convened by Queensland Positive People and funded by the HIV Foundation Queensland. It followed on from the ‘Beyond Blame’ pre-conference to AIDS2014 in Melbourne, where I was a rapporteur for the breakout session looking at alternatives to criminal prosecution.

In the still image captured from video taken at Beyond Blame, I’m wearing a look of ‘you’re not going to like what I have to say (but here I am saying it anyway)’.*

That’s because the overwhelming message on HIV criminalisation has been it’s a medical issue that should be managed by public health rather than criminal prosecution.  And my reply was that public health can be just as coercive as criminal law, without the procedural fairness — the ‘right to a fair trial’ — and that this view obscures the way public health and criminal law in fact interact as part of a system for the regulation of HIV transmission.

The five stage National Guidelines for managing people who place others at risk of HIV infection demonstrate the articulation of public health management and criminal sanctions as part of a system of responsive regulation (Ayres & Braithwaite, 1992).

Public health and criminal law form two corners of a regulatory triangle around HIV, the third consisting of the cultures of protected sex and safe injecting in communities affected by HIV, as well as the community-based health promotion that shapes these cultures: what I’m calling, after Mitchell Dean, the social governance of HIV transmission (Dean 2010).

In my PhD, I’m using that framing to help think through the imbrication of stigma in the development and audience reception of social marketing campaigns.  At the Brisbane forum I made four concrete recommendations for people thinking about policy reform around this issue:

  1. Improve the procedural fairness of the public health management process.  This is a no-brainer, particularly in Victoria, where the right to a fair trial is part of our Charter of Human Rights and Responsibilities.
  2. Improve the quality of engagement between health departments and communities affected by HIV.  I’m using ‘engagement’ in the sense developed by the W3 project: not ‘consumer representation’ but organisational mental models of the diverse needs, identities and experiences that exist in the community.
  3. Restrict the use of criminal law to cases where it is clear the transmission of HIV has been used to cause harm — not as a regulatory instrument to deter unsafe sex or intervene in sexual cultures of condomless sex.
  4. Strengthen the CBO role in the social governance of HIV transmission.  In particular, this involves raising the awareness of HIV-negative people of their own responsibility to manage risk.

The full analysis and recommendations will appear in a forthcoming article – stay tuned!

Suggested citation

Reeders, D.  “Regulating HIV transmission” in Bad Blood [blog]. 4 March 2016.

* Some would say that’s my usual look.

First day at school

In December I got some lovely news: I was accepted into the PhD program at RegNet, the School of Regulation and Global Governance at ANU, with an APA scholarship to study stigma and social marketing — the focus of this blog, now in its tenth year.

choosing a program

I’ve been thinking about this project for a long time, and looking for the right home for it: it’s public health but it’s also sociology and cultural theory, and I’ve watched friends with interdisciplinary or critical public health projects struggle at public health departments.

I’d watched as senior staff in some departments came under so much pressure to publish and apply for grants, they pushed students to complete an increasingly standardised ‘qual PhD’ of 12-20 interviews with a lit review and a light dusting of Foucault or Bourdieu.

I thought I’d need to do a Masters first, because I didn’t have Hons.  In 2012 I’d enrolled in the Masters of Public Health (Research) at Flinders via online learning, but that was not a good experience — it was just lecture capture with an online forum tacked-on, and discussion in the forums was limited to asking and answering factual questions.

There’s been a big push at Australian universities to enrol more Masters students (because $$$) and more students via online learning (in the belief that it can be done cheaply).  I’d encourage anyone thinking about a Masters program to ask questions about their approach to teaching. The most important question is ‘will I be part of a community of teaching and learning?’

Even if you’re studying on-campus, if you’re one student out of 300 with no tutorials, or your tutors are casuals who only get paid for time in class and marking, the chances are you’re going to experience content delivery rather than the more personalised and interactive experience that constitutes education.  End rant…

What attracted me to RegNet were the clear signs that it takes seriously the pedagogy of postgraduate research trainingas well as the visible diversity of research projects and approaches represented among its staff and students.  The process of applying for a place  was designed to assist prospective students to put their best foot forward, rather than having the feel of a Medieval trial-by-ordeal.

I had my ‘first day at school’ on Thursday last week.  Induction was short.  (I’ve had jobs where induction took two days — HR didn’t get the memo about adult education.)  Over a couple of hours it laid out a roadmap and introduced the people who could help at different points.  I’m one of a cohort of seven PhD students from radically different academic traditions, including engineering, artificial intelligence, law and society, public health and public policy.  I’m really looking forward to finding out where our interests overlap.

circle of niceness

Rachael Pitt and the Thesis Whisperer team coined the term ‘circle of niceness’ and I’m really thankful to a bunch of people who included me in theirs — I just wouldn’t be in this position without their care, advice, guidance and good humour over the years and I want to take a moment to acknowledge it here.

Above all, my ‘fairy godmother’ Anna Georgiou literally fed and housed me (she was my landlady) and took me for coffees when depression was kicking my arse.  My former boss Graham Brown alternated, with so much tact, between supervising my work and treating me like a research colleague.  Senior academics Gary Dowsett, Michael Hurley, Garrett Prestage and Kath Albury took me for coffees and gave honest advice on getting into a PhD program.  Sonny Williams and Naomi Ngo encouraged me to develop my research skills and interests in my practice in health promotion.  The Research Whisperer, Thesis Whisperer and twitter #phdchat communities let me eavesdrop and occasionally butt in, and from them, I met people who have supported me more proactively — Tseen Khoo and Megan McPherson and Bree Blakeman, as well as Sam Carroll and Tammi Jonas who started out in academia and left to do other more fabulous things.  Bree and Jude Byrne and Zoe Bowman in particular helped me find a home in Canberra.  Dion Kagan was incredibly generous with encouragement at times when I really needed it, and Natalie Hendry who took me for lunch and listened to my shit.  My Dad and Helen Marshall gave gentle advice and support over the years.  In particular, thanks to ANU RegNet and my panel, Kate Henne, Gemma Carey and Helen Keane for inviting me onboard!

I have benefited from the intellectual and emotional labour of so many women, frequently on top of caring for family members and children, looking after students and making unpaid but essential contributions to the life of the centres where they work and study.  I am really fucking grateful for this work and I do my best to spot where I can do it myself for others.

so what’s it all about?

In my PhD I want to sit down with teams at two different organisations working on two different campaigns – one in HIV and one in smoking or obesity prevention – to listen for opportunities in the campaign development process to think about how stigma might impact on the effectiveness of our messages and on unequal outcomes we see in prevention (in low income families, culturally diverse people, Aboriginal communities and other marginalised populations).  My first year will be a literature review on stigma and in second year I’ll be doing field work — so if your team or organisation might be interested in taking part, please let me know, I’d love to hear from you.

 

Opening up the debate about #PrEP

This year for World AIDS Day, the Wheeler Centre has kindly published a longform article I wrote about PrEP titled ‘The other blue pill’.

I wanted to resist taking a side in the debate ‘Is PrEP good or bad’ or ‘Should we fund PrEP’.  These are phoney debates: we toss around arguments for/against, even though PrEP is going to happen. 

What we’re really fighting over is different ways of framing the problem that lead in different program and policy directions.

As a piece of social science writing, I wanted to leave readers with a couple of different ways of thinking about how those debates are framed. Framing PrEP in terms of ‘who should pay’ and ‘who deserves access’ leads naturally to discussions about limiting access.

We know where that leads.  Victoria has a post-exposure prophylaxis (‘PEP’) program that was funded via block grants to hospitals rather than the PBS.  Funding hasn’t kept up with demand and the use of newer, more expensive drugs.

As a result, we have de facto rationing.  There is no incentive to promote PEP widely in the gay community, and awareness of PEP has remained stubbornly around 65% on the gay periodic surveys.  ‘Repeat presenters’ — people at high risk of HIV infection who we most want to target — report encountering ‘moral friction’ from hospital providers, with remarks like ‘It’s not the morning-after pill, you know!’  The Alfred Hospital has resumed its policy of refusing international students access to PEP — even though PEP isn’t funded by Medicare.

So my goal in the Note is to challenge the implicit logic that makes ‘But should we pay for that?’ a rhetorical question, answerable only in the negative.  I’m walking in the foot-steps of Gregory Tomso’s analysis of public health responses to barebacking:

In his essay “Violence and Metaphysics,” Jacques Derrida … writes of philosophy’s “unbreachable responsibility” to poses questions in such a way that “the hypocrisy of an answer” is not yet “fraudulently articulated within the very syntax of the question.” (p91)

Framing therefore involves symbolic violence: it poses the question in a way that closes off certain answers.  As Tomso notes, “there is also the violence that belongs to wanting to know something about another, the Other, who is not the self” (ibid).

So I didn’t want to argue my case via universalising discourses like human rights, the responsible subject, or ‘we all want the same things really’.

The article describes cultures of sexual adventurism among gay men as one of those laboratories for learning about challenges that face the broader community — such as the sustainability of monogamous relationships and the ethical negotiation of casual sex.

But it also flips the script a bit: instead of pathologising sexual adventurism, it uses major representative studies (HILDA and ASHR) to de-naturalise  heterosexual practices of monogamy and highlight the need for the ideas and practices queer culture is experimenting with.

And it points out the injustice of relying on social innovators experimenting on their own bodies and relationships without providing them with the basic resources needed to do this safely.

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how social change happens

In case the idea of ‘cultural laboratories’ sounds a bit weird, it reflects some thinking I’ve been doing on the side of (recently-concluded) project work with the ‘What Works and Why’ study led by Dr Graham Brown at the Australian Research Centre in Sex, Health and Society.

This thinking considers how social change happens if we understand society as a complex adaptive system: a ‘complex macroscopic collection’ of relatively ‘similar and partially connected micro-structures’ formed in order to adapt to the changing environment, and increase its chances of survival (Wikipedia).

In a 1999 paper, the European social theorist Klaus Eder set out to explain why ‘society learns, and yet the world is hard to change’.  If we can get a bunch of AFL footballers in the room and convince them that homophobia is bad (social learning), why is it so much harder to discourage homophobia as part of the culture of Aussie rules in society (social change)?

Eder suggests that we learn how to overcome social problems in small networks — but that only leads to social change when our discoveries get captured, remixed and amplified through higher-level processes, such media narratives, popular culture, government policy, etc.

In my example, this might occur via the AFL changing the rules to heavily penalise homophobic behaviour.  No doubt this would cause a fair amount of backlash, but that’s part of the amplification process.  The change might occur through public debate triggering similar learning processes and the dissemination of findings across a much wider range of ‘cells’ in the honeycomb fabric of society (clubs, schools, families, etc).

In an earlier post I argued that news coverage alone is pretty unlikely to achieve this, but feature journalism probably does, because it provides enough space to offer an alternative framework for understanding the issue, and it allows the mixture of research, argument and personal narratives.  We’ve become literate in science writing but the genre of social science writing can barely be said to exist, beyond the Gladwells and the Freakonomics of this world.

But even when social learning produces innovative strategies, the achievement of widespread social change is by no means guaranteed.  Different ways of having the debate, as I argue above, can stifle the change process.

We know that major social change tends to happen when learning bubbles up from a particularly innovative network during a ‘window of alignment’ among much larger social processes — such as a media crusade and a tidal swell of popular opinion and a change of government: moments that Kingdon called ‘policy windows’.  That’s why timing is such a crucial part of effectiveness in policy advocacy.

*         *         *         *         *         *

trying to make social change happen

Having an account of ‘how social change happens’ is not the same as knowing ‘how to make social change happen’.  To be clear upfront, I don’t think there is a recipe you can follow that’s guaranteed to make social change happen.  But there are preconditions we can achieve to make it more likely.

One is to keep the innovation bubbling away in those smaller networks — they are the cultural laboratories of change. If they dry out, you can’t just restart them at will when you need some good ideas in a hurry.

I saw this in action at the first national conference for the Australian Forum on Sexuality, Education and Health, with a panel featuring young queer educators talking about trigger warnings, activities for teaching affirmative consent, etc.  Some of the strategies sounded impractical to me, but practicality is not the point: experimental intensity is the point.

Second, we need a middle tier of project workers, researchers and policy advocates, who are paying attention above and below, identifying and validating good strategies from the laboratories and thinking about how to package them up, so there are policy options ready to go when those windows of opportunity appear.

Both of these suggestions depend on our health and welfare systems and the human services sector having enough resources flowing within them to support redundancy, which is essential for diversity.  Without that, you don’t get the multiple competing ideas that are essential for innovation.

Stigma is about social exclusion

In the conversations we have about HIV at national and global conferences, the word ‘stigma’ is all too often used to mean ‘HIV-positive people having negative experiences’.  When I first began working on stigma as an issue, back in 2008, my goal was to expand our sense of what stigma means.  I wanted the sector to adopt a language for talking about stigma that acknowledges that it has different components and works on multiple levels.

In particular, I wanted the sector to focus on how stigma is implicated in social exclusion — people not being welcome in particular social networks or settings — and social participation — people not being able to play a meaningful role within communities, workplaces, sexual cultures, social movements, arts and culture, policy-making, governance and democracy.

Along the way I’ve noticed parallels between the work I was doing around HIV stigma and anti-racist social movements.  For instance, stigma can be a productive framework for understanding sexual racism as a stereotype driven process for excluding non-white men as potential sexual partners.*

I am absolutely blown away by this article by Hanif Abdurraqib in Pitchfork magazine, looking at the failure to think about racism, and the way violence may be differently experienced by black people, as drivers of his experience of exclusion and alienation from the Midwest punk community.

Not least because the writing is so damn powerful:

I don’t remember the first time I noticed the small group in the back corner of a punk show at the Newport (one of the many venues that I fell in and out of love with in my hometown of Columbus, Ohio), all of them, in some way, pushed out of the frenzied circle of bodies below, and the alleged loving violence that comes with it. I do remember the first time I became one of the members of that group in the back corner of shows. At 18, I hung in the back corner of the Newport and watched NOFX with the rest of the kids who didn’t quite fit, or at least became tired of attempting to fit. I looked around and saw every version of other, as I knew it. The black kids, the girls my age and younger, the kids most fighting with the complexities of identity. We sat back and watched while NOFX tore through an exceptionally loud version of “Don’t Call Me White”, and watched below, as a monochromatic sea crashed against itself.

In a piece evocatively titled ‘The Rice Steamer’, Australian researcher Gilbert Caluya has described something similar on the gay scene:

During one of my trips to a particular club I must have looked confused or perhaps just out of place because a white man came up to me to offer some help. ‘If you’re looking for where the Asians are you can find them over there’, he said pointing to a group of Asian men. Over the course of the fieldwork it became evident that this nightclub seemed to ‘reserve’ this particular space for Asian men and rice queens who huddled around the bottom of the stairs next the stage.

Caluya uses the concept of ‘striated space’ from Deleuze and Guattari (1988) to analyse how gay community venues are partitioned into zones where people of non-white race can experience more or less microaggressive friction — such as the ‘helpful’ direction he recounts in the quote above.

These two quotes can help us think about how stigma is involved in experiences of social exclusion that accumulate and calcify into social structures that are, in turn, implicated in the inequitable distribution of access to life chances — such as opportunities for love, sex, and social connection; and more concretely, health services like counselling and technologies for health like PrEP and HIV testing and treatment.

endnotes

* I wouldn’t go as far as Link, Phelan and Dovidio (2008) in speculating on stigma and racial prejudice being the same things.

Writing after trauma

Trigger warnings for family violence and sexual assault.

How-to-repair-a-hammock-or-fish-net

Fig. 296 ‘How to repair a hammock or a fish net’

My new year’s resolution, declared on twitter, was to write properly about trauma. Here we are, a couple of weeks later and it’s August.

Why the delay? It was not reluctance to start but facing down the central problem of writing after trauma: finding where to begin and how to end. Trauma, by definition, resists those acts of location.

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Naming, shaming and blaming on social media

lord-of-the-flies-originalI’ve been interested in shame and stigma for a long time, so I was looking forward to last night’s Midwinta discussion panel on ‘Naming, Shaming and Blaming on Social Media’ at Hares and Hyenas.  The convener was Lana Woolf and the panelists included commentator Clementine Ford, performer and thought-provoker Lauren Stardust, and my colleague and friend, Natalie Hendry, whose PhD research looks at how young people with mental health conditions use social media spaces.

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Language and the blame game in global HIV policy

I am loving this post by Alice Welbourn on the 50.50 blog at openDemocracy.

Some UN documents, such as the 2013 WHO HIV treatment Guidelines, seek for us to “achieve viral suppression” and if we don’t, health staff –  even some male activists with HIV – brand us as “defaulters”, “failures” “wasting resources” and worse, with their targets and goals unmet. Susan Sontag wrote of this “blame the victim” mode long ago and nothing has changed. Even the phrase “lost to follow up” and “treatment-naïve patients” also make us sound somehow – well – naïve, careless and thoughtless, as if there might not be key intentional reasons for our “failure” to return to a clinic. In a recent trial in South Africa, where it was discovered that young women participants had not in fact made use of a tablet and gel that were being trialed when they said they had, they were deemed by the researchers to have ruined the trial by “lying”.  As Professor Ida Susser explains: “when a study fails, we must be careful not to imply that the subjects are at fault. My analysis of the study suggests, rather, that research design was to blame.”

Read the full article here.